Ectopic experience/advice

[sarcaztic10]

My 3rd loss was an ovarian EP. This is my story from just before I got my BFP up to the day I found out it was an EP.

I had tested a few times before AF was due with nothing but BFN's and then I got what I thought was AF, it was a few days of light bleeding or what could be considered heavy spotting. I tested a day or two after AF because with my first loss I had bleeding before I got a BFP so now I get suspicious when I have a very light AF. So, of course I got a very light BFP at that time and went in for betas. My first beta came back at 26 at approximately 16 DPO. I was devastated because I knew that this was a loss. Then my second beta came back at 52 and I was so happy, I though I might actually have a chance. I got another set of betas done and every time they doubled exactly or came in just under. I was elated and I started to hope that this might end in my rainbow. I had previously been diagnosed with low progesterone and I started on 300 mg of progesterone but one of the things my MW noticed was that my progesterone was still consistently coming in low with this pregnancy. Even with the progesterone I was already taking it never came in over 11 so they doubled my progesterone to 600 mg's a day.

I thought everything was going okay but looking back on everything I remember always having a dull pain in my lower back and hip area. It wasn't painful enough to affect my everyday life or activities but it was enough that I felt like I had to take Tylenol more than just occasionally. The dull pain increased as the pregnancy went on and did start getting worse but I thought that it was just normal stretching pain that I was noticing because PGAL brain had made me hyper aware of everything.

I went into my 7 week ultrasound scared and nervous because deep down I had this nagging feeling that they would not see anything and that something was wrong. I wrote those feelings off for so long because I figured that it was just PGAL brain. On the ultrasound they see a sac (now we know it was a pseudo-sac and not a real one) with nothing inside and no heart beat. They did not look any further, they just sent me back to my MW's office so she could explain. My MW reviewed the ultrasound and told me I was having another loss and scheduled me for another beta so they could start tracking them down to 0. My beta came in at well over 14,000 and my MW called and said maybe you are not having a loss and said that I was probably just very early in my pregnancy. She wanted me to come in two days later to get another beta.

The morning of my next beta I woke up to get ready for work and went to the bathroom. I got up and washed my hands and then came the most pain I have ever felt in my life. I couldn't think, I couldn't move, all I could feel was pain. I stumbled to the bed and laid down and screamed for my Husband who was in the other bathroom. He came and called my MW's emergency line where they told him to rush me to the hospital. I made it to the hospital and they got me in right away. I was still crying and screaming in pain so they gave me a few doses of morphine. They took me in for an ultrasound there and they saw a lot of free flowing blood. They did not see the pseudo-sac but what they did see was a large cyst on my left ovary that was pushing my uterus and right ovary behind my pelvic bone so far that they could not even see my other ovary. They did an emergency exploratory laproscopy and found that I had an ovarian EP that had burst and they removed a grapefruit sized cyst from my left ovary.

My story is not typical at all because of the rare type of EP I had but I wanted to share it anyway and tell the ladies seeing this that you should always follow your instincts and if you are in constant pain, even if it is a dull ache, tell your Dr about it and ask questions. My betas Doubled so no one even questioned the low progesterone while I was on supps. They just went ahead and doubled the amount I was taking. I know PGAL is a total mind fuck but listen to your body and your heart and always ask questions even if you have to be a pest to get answers. I wish I had listened to that nagging feeling that something wasn't right and asked more questions or asked about a possible EP.

[bethkate]

My first loss, in June '13, was an ectopic in my left tube.

I got a BFP at 14dpo after a few negatives prior to that. Two days later, I went to my OB for my first appointment, and I got a negative urine test in the office. They immediately treated me as though I wasn't pregnant, and I had to really push to have blood work done. They sent me to the lab, and sure enough, my hcg came back at 32, but the doctor made it clear that it was super low for 4w4d.

A week after my bfp, I started cramping and bleeding. I had what appeared to be a normal period for 4-5 days, and I assumed I'd had a CP. I didn't bother calling my doctor because I had an appointment scheduled for what would've been 6w4d anyway. When I went in, I explained that I assumed I had already miscarried, and I was sent for more blood work. My betas that day were 300, and then they were around 500 two days later. At that point, we realized that I likely had not miscarried yet, but that it probably wasn't a viable pregnancy.

I spent two more weeks going for blood draws every 48 hours and had two ultrasounds that showed nothing. Then, at 7w6d, I started having some pain on my right side. Rather than going for my scheduled blood draw, I went to the ER instead. At the hospital, they saw a "mass" in my left tube (we have no idea what was causing the pain on the right side). The on call OB said she wanted to operate, so I had laparoscopic surgery a few hours later. They were able to keep my tube, but I found out a year later during an hsg that my tube is closed, so they probably should've just removed it.

I wish I had known how difficult recovery from the surgery was going to be. If I had known, I might've pushed for a MTX injection prior to getting to that point. It took me about three days before I was able to walk around my house on my own, and it was about a week for the pain to mostly go away. Also, I probably would still have two working tubes had I gone the MTX route. Hindsight is 20/20, though.

[emmylo413]

Sarcaztic10, your symptoms sound similar to mine. I've also had this nagging tugging in my lower right pelvis and hip area and chalked it up to stretching. It comes and goes and sometimes I pop a Tylenol when needed. When I had more cramping I called the doc after hours and was reassured all was normal. All the while I've had normally doubling betas and zero spotting. Fast forward to last Friday at our first ultrasound when all they found was a sac at 6w4d. They want me to repeat the scan this upcoming Wednesday (5 days later) to see if there are any changes. If only a gestational sac shows again would you recommend asking about possible ectopic/psuedo sac? I had assumed it might be another blighted ovum like I had previously but since have heard some stories about empty sacs pointing to ectopic. I don't want to let something go but I also know I have a total tendency to overreact and think I have the rarest and most horrible conditions. Advice?

[goldenlove3]

This was my very first BFP in the 18 months that we've been TTC. Unfortunately, it ended up being ectopic.

My BFP was a complete surprise because it came a week after I had my period. I shrugged it off as just being a crazy cycle but I guess looking back at everything, it makes sense. I went in for bloodwork the next day and my HCG came in at 124 and progesterone was low 7. I knew these numbers looked really low for being 3 weeks past the IUI but my next HCG was more than double. I went from 124 to 316 then to 2080 4 days later. About 9 days after getting my BFP, I woke up to cramping and an intense ovulation type pain on my left side. It lasted a couple hours but eventually stopped. I also noticed brown spotting around the same time but that also stopped. I asked the nurse about it and they said it was probably nothing but to go to the ER if it became worse. We scheduled another HCG for that day just to put my mind at ease. We were getting ready to go on a road trip the next morning so I wanted to make sure everything was ok before we left.

The next day I felt pretty good all morning until around noon when the intense pain on my left side came back. I fought through a couple meetings at work then noticed bright red spotting. I told H that we should probably go to the ER after work just in case.

I checked into the ER and got a bunch of bloodwork done. Then we finally made it to ultrasound. All I wanted was to see the heartbeat and I would know everything was OK. Unfortunately, there was nothing but a pseudo-sac. She said I could just be really early so I tried to stay positive about it but I knew I couldn't be that early.

We went back to the room and just waited and waited. I was starting to get mad that it was taking so long. I convinced myself that everything was fine and just wanted to get released. Finally, a PA came into our room and asked "how far along were you?" My heart sank and I told her about 6 weeks. She broke the news that I had an ectopic pregnancy and unfortunately there was no way it would make it to full term. I immediately broke down into tears when she left the room. They called in the OB on call to discuss options with us. My HCG level was dropping and they saw a mass in my tube. They recommended methotrexate injection so that is what we did. I was released from the ER that night.

We ended not going on our trip and stayed home to rest instead. Aside from the complete emotional mess I was, I was feeling fine. Then next day, the intense pain came back so H forced me to go back to the ER. They ran more tests and did another ultrasound. At first everything checked out fine. They were about to release me with pain meds. Then the doctor told me to hold tight. Turns out, one of the radiologists thought that I had more fluid in my ultrasound then the previous one so they told me that they couldn't release me. Instead, I stayed overnight for observation so they could continue to check my blood levels. They didn't want to rush into surgery if it wasn't necessary. The next day, I was finally released. My numbers all checked out fine and my pain was not returning. HCG was dropping like it should. The only good news I got all weekend was that I didn't need surgery.

So that is my story. Sorry if some of it doesn't make sense.

[kdyhopeful]

Hi there - I am currently recovering from EP. I wanted to share my story because I've found through this experience that you're your own advocate. No one knows your body like you do and I encourage women who feel as if something is wrong to be proactive and push your Doctors, when needed.

10 days go I got a BFP after months of trying. I was on Femara to help me ovulate. I was happy that my 4th round worked and being on a bunch of hormones paid off. It was a Wed I found out I was pregnant. I was so happy and felt like this was it. By Sunday I noticed just a bit of spotting which was brown discharge and got worse over the next few days. By Tuesday AM, I called my Dr and spoke with her nurse. She told me that the spotting was normal and to keep an eye on it. By this point I had red bleeding (not enough to fill a pad but red to me was scary enough) and I started having bad cramping on my right side. Nurse told me it was probably implantation bleeding (what?!?!). I disagreed and pushed for an appointment. My Dr wasn't available that day or the next, so I met with a different Dr at another location. I got an ultrasound done and was suspecting them to tell me I miscarried. The technician was quiet and not very talkative. They took me to a room where the Dr came in and told me I was having EP. Unfortunately I had no bloodwork done up until this point so It was all based on seeing a mass NOT in my uterus. The right side pain correlated to the mass they noticed on the right side. I was by myself; my husband was at work. They immediately took me to the ER and started tests. My betas were very low so the Dr thought it was an early pregnancy and too early to see the sac. She wanted to monitor me the next few days and take it step by step. My pain got worse overtime, as did my bleeding.

I went in to my Dr on Wed for more blood. HCG betas were dropping very slowly, another sign of EP. At this point EP was not confirmed but suspected. By Thursday, my Dr confirmed EP and gave me 3 options - wait and let it pass on its own, Methotrexate treatment, or surgery. Now, I am the type that was worrying about my tube rupturing and not only having a baby at risk but myself. I immediately threw the 1st option out the window. I vacillated between meds and surgery for quite some time. After asking about the risks for both and success rates for both, I ended up choosing surgery. I know most would want to avoid that but here's where I want others to know my story. The meds are more cost effective but there's a chance I would have needed them not only once but twice. And if that didn't work, I would need surgery. In my heart I knew something was wrong based on what my body was telling me and I wanted it over. I wanted it out so I could reduce my risk fully and not risk a rupture and internal bleeding. So I got surgery. Dr's did a great job and we got it just in time. My tube was damaged and I already started bleeding internally. I asked my Dr. before surgery to do a test of my left tube to make sure everything was okay and there was no blockage. She said she would try. Indeed, all is good on the left side which makes me hopeful I can have a normal pregnancy in the future.

So this is a long post and I don't want to turn anyone off from meds. In fact, I think it's just as effective and more cost effective as well. I just caution each person to be their own advocate and do what your body is telling you to do. Don't let nurses tell you it's just cramping and will go away if you've had it for greater than a few days and it's getting worse. It never hurts to ask questions and ask for tests to give you peace of mind.

[amandaree]

I've had two ectopic pregnancies and both experiences were very different. I'll share both in hopes that it helps someone going through this scary time. Ectopic pregnancy is serious and life threatening. I pray anyone going through this gets the help and healing that that they need. This is long but I hope it helps -

My first ectopic was in 2007 and I didn't even know I was pregnant. I have PCOS and my cycles were very irregular. My DH and I were not trying not preventing at the time, but with the PCOS it was not unusual for me to go 3 months or longer without a cycle. So it had been several weeks since my last period and I didn't really think anything was unusual. I started bleeding and thought my period was starting. I bled for a two days and then it stopped. Then a day later I started bleeding again. Bled for another two days and then it stopped. I commented to a co-worker that I was having a really weird period and kind of shrugged it off. Then about about 3 days later I started cramping and bleeding and I was sitting in a staff meeting and my boss looked at me and asked if I was ok. I whispered to her that I was just having bad cramps. Then it stopped it again and I thought gosh I'm glad that period is over.

Sunday morning came and I was getting breakfast and getting ready for church when I felt pain in my abdomen that wrapped around into my bottom. It wasn't much at first, just uncomfortable. I thought "if I could just pass gas, I'd feel better." It felt a lot like gas pain. I went to church with my husband and by the time the service was over I couldn't even stand. The pain was intense. It hurt to stand or walk or even sit. It was sharp in my right side and down into my rectum. My husband helped me home and I went into the bathroom where I discovered I was bleeding again. Ok something was wrong. We lived in a small suburb of metro Atlanta and we drove into a small hospital that was closest to our home. I could barely walk into the ER I told them I was having intense cramps and bleeding. They told me to have a seat. We waited in the waiting room for over an hour while I cried silently. Other patients were asking me if I was ok and I'd just say yes it just hurts. One woman asked me if i was pregnant and I said no, I just had my period last week. I finally was taken back to a room. They said they wanted to do some blood work. We waited another 45 minutes for a lab tech to come in and draw my blood and then another 30 minutes after that he walked by room again saw me crying and said "Are you still waiting? those nurses are just down there laughing and eating lunch." He went and told them I was in pain and they needed to do something. Finally a nurse and a female doctor came in said "You're blood test says you're pregnant, so now we have to find out why you are bleeding." She did a pelvic exam and complained that she couldn't see very well because there was too much blood. I thought I was going to die it hurt so bad. Then she sent me for a transvaginal ultrasound. This is where they use a long wand or probe that is inserted into the vagina. It gets a better view of the uterus than an external abdominal one. It was extremely painful - advice for if you have to have this and if you are in pain - ask for a cushion or pillow for under your hips. The tech said "Oh I can defintiely see why you are in pain but the doctor will explain more." So I'm taken back to my ER room and we wait again for the doctor. She finally came in and said - "you have an ectopic pregnancy and it requires the care of an surgical obgyn. We don't have one in this hospital so we need to transfer you to the larger hospital in Atlanta." So we waited again for more than an hour for the ambulance to arrive to take me the 15 miles into the hospital in the city. It hurt so bad I couldn't move from one bed to the other.

We get to the new hospital and I'm begging for something for the pain. They say because I'm pregnant the only thing they can give me is Tylenol. I said it's ectopic it's not viable give me something stronger. They said they had to confirm the diagnosis for themselves - and so they ran the same tests all over again. Another painful pelvic exam, another excruciating transvaginal ultrasound. Then they came into my room and said they were waiting for the on-call obgyn doctor to arrive. We waited and waited again. Finally she came in and when she saw my scans she yelled at the others there that I should have been in surgery hours ago. She explained that my tube had ruptured and that I required emergency surgery. She gave me morphine - finally, and 10 hours after I first walked into the ER at the other hospital I was finally taken in for surgery. I ended up losing 3/4 of my blood volume, required a blood transfusion, and stayed in the hospital for 2 days after surgery. I lost my right tube but she saved my life.

So my advice from this experience is to speak up! I wish I had made a bigger fuss at the first hospital for more attention. I very nearly hemorrhaged to death while waiting and waiting. I should have demanded more attention from the nurses let them know how much pain I was in and made them pay attention to me.

My second ectopic was almost 5 years later exactly. This time I didn't have any spotting or bleeding but I had that same pain that started in one side and wrapped around into my bottom like gas. It was little at first and then persistently got stronger and more constant. My husband was taking me out for a date night and I refused to give in to the pain. We went to the movie stood in line for concessions but by the time we got our popcorn my husband looked at my face and said..."I'm taking you to the ER." So this time I went to ER I told them I had cramping and pain and a history of ectopic pregnancy. They rushed me back to the ER, did blood work and didn't wait for the results before sending me for a transvaginal ultrasound. This ultrasound tech was the one who gave me a cushion for my hips and it took the pressure off and made the ultrasound much more tolerable. She said "well I can't see anything right off but if your hcg level is positive then I need to keep looking. I need to get your results." She left the room and came back a few minutes later. She had a look on her face that I knew wasn't good and said "I'm sorry I need to keep looking." I said "that means it was positive." She said "I'm not supposed to tell you, I'm supposed to let the dr tell you but you already know." I just started to cry because I knew then that it was ectopic. The ER dr confirmed that I was pregnant but because I was still pretty early they guessed 4 weeks based on my HCG level and my LMP. So they sent me home and told me to follow up with my RE. My RE did HCG labs for that next day my HCG was only 20 48 Hours later it was 38 and then the next draw it was 35. So my RE confirmed it ectopic and prescribed an injection of methotrexate. I picked it up at the pharmacy and then took it to my doctor's office where the nurses injected two shots at the same time. It made me feel sick for a few days, nauseated and dizzy. I even had a few clumps of hair that fell out. It's the same medicine they use in some chemotherapy treatments. I then started to cramp and bleed and had what was basically a normal period that last just bit longer than usual. We had to TTA for 3 months because it takes that long for the medicine to work it's way out of your body and could be harmful to a new baby if you were to get pregant in that time. This experience was far less traumatic than the first, it allowed me to save my left tube. Where I had lost the right tube with the first one the loss of my left tube would have put an end to any hope of conceiving on our own. So the key is early detection, paying attention to your body and seeking medical attention quickly.

Sorry this was really really long. I guess I needed to write it all down and get it out. If you're still reading, thank you for letting me share my stories with you. I hope it helps in some small way.

Pax.